Abstract
Most states currently have laws which result in compulsory neonatal screening practices, despite a widespread consensus that participation in genetic services and programs should be voluntary. In 1976, Maryland adopted a regulation designed to respect parents' rights to refuse neonatal screening by imposing a parental consent requirement. The results of a study designed to evaluate the effects of this regulation are reviewed here. Many health care providers were unaware of the parental consent regulation. However, hospitals were generally in compliance with the technical stipulations of the regulations. There was little evidence that the regulation resulted in additional costs to the health care system, either in terms of hospital staff time or in terms of loss of efficiency in the number of infants screened. Mothers affected by the regulation were largely in favor of being informed about neonatal screening and learned a significant amount of new information from the disclosure process. They were almost evenly divided on whether they favored parental consent.
Full text
PDF
Selected References
These references are in PubMed. This may not be the complete list of references from this article.
- Faden R. R., Holtzman N. A., Chwalow A. J. Parental rights, child welfare, and public health: the case of PKU screening. Am J Public Health. 1982 Dec;72(12):1396–1400. doi: 10.2105/ajph.72.12.1396. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Faden R. R., Lewis C., Becker C., Faden A. I., Freeman J. Disclosure standards and informed consent. J Health Polit Policy Law. 1981 Summer;6(2):255–284. doi: 10.1215/03616878-6-2-255. [DOI] [PubMed] [Google Scholar]
- Meisel A., Roth L. H. What we do and do not know about informed consent. JAMA. 1981 Nov 27;246(21):2473–2477. [PubMed] [Google Scholar]
- Steiner K. C., Smith H. A. Application of cost-benefit analysis to a PKU screening program. Inquiry. 1973 Dec;10(4):34–40. [PubMed] [Google Scholar]